OBJECTIVES: Most Health Technology Assessment (HTA) decision-making frameworks include three pillars: Relative clinical effectiveness, Cost-effectiveness, and Budget impact. Patient experience data (PED) plays a limited role in these pillars. This study aimed to explore how PED can be systematically and comprehensively incorporated into the assessment phase of HTA decision-making frameworks.

METHODS: Semi-structured interviews lasting 60 minutes were conducted with 10 HTA stakeholders. The interview guide included open questions asking the participants about how they defined PED, their views on the current inclusion of PED in HTA-frameworks, whether and which PED they thought should be included, and where PED could be best included. A purposive and snowball sampling approach was applied to select interview candidates. Interviews were transcribed ad verbatim. Transcripts were coded and analyzed in line with grounded theory. Saturation analysis was conducted to be confident that no important themes, or concepts were missed.

RESULTS: The 10 interviewed stakeholders came from six countries: three professors in HTA/PED, one HTA journal editor, three HTA/PED advisors, two patient representatives, one employee pharmaceutical company (two participants were ex-HTA-body employees, two were ex-pharmaceutical company employees). Concept saturation was achieved. Participants described PED as broad experiences related to disease/health, of qualitative and quantitative nature, described by patient, or others. All participants felt PED was currently not systematically and comprehensively included in HTA. Based on the stakeholders’ views two potential HTA decision-making frameworks are proposed to better incorporate PED: 1) adding ‘Patient benefits’ as an additional pillar, 2) Changing the pillar ‘Relative clinical effectiveness’ into ‘Relative effectiveness’ with two buckets: ‘Clinical effectiveness’ and ‘Patient effectiveness’, which some proposed could be a part of Joint Clinical Assessment (JCA).

CONCLUSIONS: HTA-stakeholders propose a more prominent role for PED in the HTA decision-making framework by specifically and separately including ‘Patient benefits’, or ‘Patient effectiveness’, potentially as part of JCA.